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LIVING WITH HEART FAILURE #HFPATIENTSTELLUS We asked our community of heart failure patients about living with heart failure, its impact on their lives and what they want from treatments and new research.
OUR HEART FAILURE COMMUNITY WHO ARE OUR HF PATIENT COMMUNITY?
HOW DO THEY ACCESS INFORMATION? Heart failure patients tell us they use a variety of tools to access heart failure information. Our group use digital media and printed materials to find out more.
Our community of heart failure patients consists of 77% women and 23% men, aged 18 to 90 years. 24-35
65+
18-24
65+
COMPUTER
69%
24-35
PRINTED MATERIALS 35-44
SMART PHONE APPS
55-64
men
61%
women
35-44
55-64
40%
DOWNLOADS 29% TABLET 20%
45-54
45-54
Heart failure patients tell us that 28% of our community use wearable devices to track their activity.
WHERE DO THEY ACCESS INFORMATION? The majority of our group consult the internet following diagnosis in addition to their health care teams. 83% 46%
34% 19%
Web/Google
Heart failure nurse
Cardiologist
GP
1.5%
0%
Pharmacy
Family
MANAGING HEART FAILURE
IMPACT OF HEART FAILURE
TIPS FOR SELF-MANAGEMENT
COMMON WORRIES
Our heart failure patients think the most important things THEY can do to manage their conditions are: exercise, diet and maintain a positive attitude to self care.
We asked, what worries you the most about living with heart failure? Losing quality of life and not being able to do the things they used to do are the most worrying factors. Other Not being able to do things you used to
Improving your diet
Increasing your exercise
41.4%
Support from people living with heart failure
31.4%
Access to patient information booklet
4%
10%
Speaking to/ relationship with a pharmacist
?
7.1%
Quitting smoking
13.5%
21.9%
Positive attitude towards self management
12.8%
Dying
10.8%
Not being able to provide for your family
Reducing alcohol intake
Losing your quality of life
12.1%
The effect on your family
33.7%
4%
Prognosis
THE HEALTHCARE PROFESSIONALS Our heart failure community say their health care professional can help manage their condition by: Providing you with a prescription/medication
62.3%
Cardiac rehabilitation
39.1%
Fitting/providing you with a cardiac device
30.4%
Surgery (e.g. angioplasty, valve replacement)
21.7%
Providing access to heart failure nurses
72.4%
AREAS OF IMPACT Our HF patient community tells us the most impacted areas of their lives by heart failure are:
63.7%
71%
Providing access to heart failure specialists
One of the factors that our heart failure community does not worry about is being on multiple treatments.
0%
SOCIAL ACTIVITIES
26%
FAMILY LIFE
30.4%
TALKING TO ONE ANOTHER
EMPLOYMENT
27.5%
Our heart failure community talk to other heart failure patients in a number of locations:
89%
32%
29%
46.3%
18%
SEX LIFE
30.4% Facebook groups
Online forums
Patient group meetings
Patient group meetings
PSYCHOLOGICAL/MENTAL WELL-BEING
CONFIDENCE
24.6% 18.8%
YOUR DAILY ACTIVITIES
31.8%
HOW YOU SLEEP YOUR OUTLOOK ON LIFE
(at hospitals, gp surgeries, health care centres)
(outside of health care environment)
TREATMENT & TRIALS THE MOST IMPORTANT OUTCOMES FOR PATIENTS The most important outcomes for our heart failure patient community when being prescribed medical treatments for their condition. 78.5%
72.8%
7.1%
64.2%
41.4% 20%
Increasing life expectancy
Improving day to day quality of life
Being able to participate
Other exercise
Limiting side effects
IMPROVEMENTS
7.1%
7.1%
Reducing number of hospital visits
Reducing total time spent in hospital
CLINICAL TRIALS Only 23% of our heart failure patient community respondents have taken part in a clinical trial.
What would you want a new heart failure treatment to improve? Ability to remain employed
Effect on prognosis/cure
81.1% Your daily activities
26% Psychological/mental well-being
71% Social activities
39.1% Sex life
10.1% Family Life
Yes
7.2% Sleep pattern
42%
21.7%
Pumping Marvellous Foundation Patient Community 2017/18.
CONTACT US 01772 796542
Improvement in overall heart performance
www.pumpingmarvellous.org
PMTVLive
heart failure aware
[email protected]
@pumpinghearts
help for hearts (closed support group)
Pumping Marvellous Foundation, Suite 111 Business First, Millennium City Park, Millennium City Road, Preston, UK, PR2 5BL. Registered Charity Number 1151848.
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